Hope Santa visits – his reindeers and sledge are well equipped for the snow so he has no excuses.

800 ELA families were united in putting aside their struggles for a few hours and instead enjoy the sunshine, camaraderie and sparkle of Disneyland.  We were guided by volunteers, led to the most suitable rides, taken to the front of queues, and given complementary meals. We were also joined by a long list of celebrities who came to help and raise awareness about leukodystrophy for the media and the public.

Joey was a little bit tired from the long journey there but enjoyed a ride on a rocket with his Daddy and was in awe of the music and lighting all around. Sadly, he fell asleep for the wonderful Disney parade finale, despite the very loud music! and woke up when the last float passed by.  Never mind, hopefully there’ll be another opportunity ahead.

The following weekend we return to Paris where Joey will spend another day with his ELA friends at Disneyland. Rumour has it that we’ll be meeting Zinidine Zidane, so we’ll go equipped with jerseys and photos for signing!

In general, Joey is in great form and making progress all the time. He is making a really big effort to be understood, using his eyes to look at what he wants and intonation in a yes and no manner. It’s still a bit of a guessing game, but when we get it right, he now rewards us with a big smile and a mmmmmmmm. Matt and I are always impressed by Joey’s fighting character and determination.

Our friend, Uncle Bill, spent some time here with us in September and together with Matt, they have built a superb terrace around part of the house. This new ‘room’ gives Joey ample outdoor freedom in his trotter and we’re all so thrilled with it. So thank you and super well done to Bill and Matt for all the hard work. Next job is to put up a railing to stop Joey from sailing off the edge.  I also want to create a sensory garden in and around the terrace for Joey and his friends to enjoy.

You can monitor his progress here on Ironman Live.

So far he’s doing very well – he finished the swim in just over an hour in what looked like perfect conditions – a nice (pun intended) calm sea. He’s now on the big and going very smoothly…

Go Ed! Go Ed! Go Ed!

Latest update: Ed’s finished!!! Unlike England’s football performance today against Germany, Ed has delivered the goods! He’s just crossed the line in a final time of 10 hours 55 minutes.

Thanks to everyone who has supported and sponsored Ed. If you haven’t sponsored him yet, then it’s not too late!

Cycling was a big part of our lives.

If it wasn’t for Joseph’s horrendous illness we would now be enjoying watching him take his first wobbly pedal strokes on his own little bike, and perhaps even doing our first family bike ride together (although Joseph would be a bit young for the big Tour de France mountain climbs!). Joseph would also be starting school and this would have given myself and Colette much more time together to go cycling just like we used to.

Sadly, due to leukodystrophy, it is highly unlikely that Joseph will ever pedal a bike stroke and we will just have to quietly watch our friends’ and neighbours’ children make their first brave pedal strokes. We just want to be a normal family.

Well, the good news is that this weekend we took a big step towards normality. We bought a new bike chariot in which we can carry Joseph and go for rides together… as a family! Freedom and unity at last!

To celebrate we went for a bike ride and a picnic in the lovely summer sunshine. It was a classic French scene that we have always dreamed of: a family sitting in a walnut orchard surrounded by their bikes and pretty countryside. The only thing missing was a bottle of wine. Next time!

We’re now looking forward to some exciting adventures together, perhaps even a camping trip! The sort of things other families do.

Swimmers must be the most dedicated of athletes. Endlessly ploughing up & down a pool watching the tiles go by, can be no fun for anybody. At least with the cycling, running & skiing pursuits it gets you out in the great outdoors. I was considering this & obviously not concentrating on the session this week. The 3km swim will probably be the only pool time I get for the next 2 weeks, not ideal. More…

On 27 June 2010, our super-hero friend Ed Nicoll will compete in Ironman Nice (3.8km swim, 180km bike ride and a 42km run) and raise money for the European Leukodystrophy Association (ELA).

This will be Ed’s first Ironman, but he is not by any means a stranger to endurance sports: Ed has already competed at cross-country skiing in the Winter Olympics and competed in various triathlons in the past, but never anything comparable in size to an Ironman, so this will be quite a challenge for him!

Ironman Nice is widely reputed to be one of the toughest Ironman races since it involves a sea swim and a mountainous bike course.

Ed’s been training for this event since the start of the year . You can follow his account of the final few weeks of his race preparations here and, of course, sponsor him via his page on AiderDonner (for non-French readers, this is the equivalent of JustGiving.com in the UK).

5 weeks to go

Wincing with pain on the run today, after only 7km and I’m already thinking I may just sack it this lap and go home, never mind another 14km. It makes me finally realise that what everyone has been telling me, that the final leg in any Ironman Triathlon is going to be the toughest. Finishing the event will be a mental challenge, not purely a physical one. More…

Last weekend we were invited once again to the The ELA Cup organized by our local football team AS Gresivaudan (ASG) at Pontcharra. This year’s edition of the tournament took place in perfect conditions and saw 16 under-13 teams from all over France and as far afield as Germany demonstrating amazing football skills in the beautiful surroundings of the sports ground in Pontcharra.

This was the third year that the tournament has raised money for ELA and it was the most successful so far:

• During the opening ceremony all the teams arranged themselves to form the letters “E”, “L”, and “A” on the main football pitch.
• More fund-raising initiatives took place including a tombola to win some signed professional football shirts, a dedicated ELA tent, quad bike racing, and much more.
• The addition of a new prize named after Joey – “The Joseph Swift Cup” – awarded to the team having the highest score in quiz about the ELA and leukodystrophy.

All in all, not only was there some great football played, but the tournament also managed to raise over 4000 Euros! In addition it also received two full pages of coverage in the local newspaper the Le Dauphiné Libéré.

Once again we thank Thierry Pineau and everyone at AS Gresivaudan for their amazing energy, hospitality, and dedication.

Throughout all the shock and sadness we’ve felt over the past few months, Joey has been our anchor and our rock. His smiles and amazing nature has carried us through the toughest days, especially our 18 hour long and final journey back to the UK to say goodbye to Lynne.

Joe’s medical check ups continue and in April he had his first set of botox injections to reduce spasticity in his ankles. We’ve been told by doctors that this is a neurological problem caused by an erratic flow of nerve impulses sent from the brain to the muscles which causes excess contraction in one muscle group.  In Joseph’s case, his toes were remaining pointed and he couldn’t plant his heel on the ground when in his standing frame or trotter and putting on his shoes was also very difficult. A check up with the orthopedic doctor last week confirmed that the spasticity in Joseph’s ankles is no longer localised, it is in fact spreading to his thighs and hips. So, Joey will be having regular sets of botox injections at the hospital to reduce this spasticity.

In other areas, we had very good news in March when we attended the annual general meeting for ELA (European Leukodystrophy Association) in Paris. For the second time we met Professor Yanick Crow who gave us an update on his ongoing work on Joseph’s illness (Aicardi-Goutieres syndrome) and also his plans for the coming few years.  Professor Crow has dedicated his entire career to AGS and has almost single handedly discovered the existing genes that cause the different types of AGS which allows us to have a diagnosis for Joey’s illness.  Thanks to the ELA and also to the European Union, Professor Crow has recently received a substantial amount of funding to continue and expand his amazing work and team.  This is a massive step for everyone affected by AGS and raises our hopes for learning and understanding more about AGS and maybe one day finding a treatment(s), or dare we suggest a possible cure for reversing the brain damage already done?

The next few blogs will tie in Joey’s ongoing progress alongside a race countdown for our friend Ed Nicoll who will be competing in Ironman Nice on 27 June 2010 and helping us raise more money for ELA.  Ed lives near us here in France and is packing in his training with a very busy work and home life, so we are deeply touched by his madness to fit in an Ironman in honour of Joey and all other leukodystrophy sufferers.